Share your own experiences with getting to a diagnosis. What symptoms did you first experience? How can your own experience help others to get an earlier diagnosis?
- By batley · New reply November 20, 2008
- 5 replies
- hi all has anyone in england had key hole op to take a kidney tumor out , or anyone any where really , my brother has a 3,9cm tumor on kidney and was told possible key hole but i cant see it myself ...
How has VHL changed your life? Share your story with other community members, and offer your support and advice here.
- By chewbacca1965 · Posted June 22, 2008
- 0 replies
- This is for my brother that was given a chance to drive again thanks to Oprah's Big Give and our local ABC station, that was given $20,000, to make dreams come true for some deserving people in our area ...
VHL can be a strain on anyone's budget. Here is a place to share ideas for managing finances and dealing with insurance.
- By Eug · Posted yesterday at 2:40 pm
- 0 replies
- Hi, Just wondering if anyone knows whether Vhl is now classified as a disability, whereby annual MRIs/CTs can be considered part of essential routine health checks. For people with diabetes, the medication ...
Having kids? Informing your kids? Helping manage your children's health? Parents share experiences and support one another here.
- By batley · New reply November 10, 2008
- 12 replies
- ive read some things on here about people bein tested for vhl and it commin back no vhl but they do have it , im confused , i have vhl and my daughter my son come back with a no but do i really beleave ...
Young people with VHL have questions and concerns. Share your experiences dealing with your parents, your brothers and sisters, your friends, school, etc.
- By AEckerman · New reply November 13, 2008
- 9 replies
- Recent mris show several hemangioblastomas located in the nerve roots of my 16 year old. I understand that this is a rare location for most VHL spinal tumors. I was told to have her rescanned in 6 -9 ...
Caring for and about someone with VHL has its joys and frustrations. Share your experiences and get support if you are a caregiver yourself, or if you want help taking good care of your caregiver.
- By Debby3 · New reply June 9, 2008
- 8 replies
- I don't know if this is the right place to post this or not. I need encouragement. I have been a caregiving for V HL since 1987 when my husband was first diagnosed. He passed away from VHL on year ago ...
Anxiety? Depression? Fear? Discuss how your diagnosis has made you feel and offer or ask for support here.
- By gale · New reply yesterday at 1:41 pm
- 2 replies
- Hi, My name is Gale Lugo, I live in Maitland Fl, and I am the contact person in Florida for the VHL Family Alliance. If I can be of some assistance to all you Florida folks, please let me know. Maybe ...
Discuss your experiences with healthcare professionals. Help others ask the right questions when seeking help.
- By Kberri310 · New reply October 30, 2008
- 2 replies
- I'm hoping for some help. My 12 yr old has VHL with multipal spinal cord hemangioblastomas. I'm very confused and overwhelmed with researching for the best vascular neurosurgeon to guide us. We live in ...
With early diagnosis and better management, people with VHL are living longer and staying healthy longer than ever before. This is a good place to share what you have found helpful in your own life and family, and to ask for hints.
- By Beverly2 · New reply November 19, 2008
- 11 replies
- I've seen many people referring to type 2B in the discussions lately, and I was just wondering how you know that you have type 2B. When we were given Steven's genetics results, no mention was made of ...
Discuss your experiences with medical treatments.
- By StillKickin · Posted November 14, 2008
- 0 replies
- Any Info on thalidomide, temozolomide, or Auastin (bevacizumab) Chemo Drugs being used for treating kidney and spine tumors ...
Mosaicism is a rare configuration of the DNA. It only affects a fraction of 1% of the people with VHL, but it always raises lots of questions. If you have a DNA diagnosis of VHL, even if you are the first in your family, this does not apply to you. If one of your parents has VHL, this does not apply to you. It only applies if it has been suggested to you by a geneticist or genetic counselor.
- By brooke2 · New reply June 9, 2008
- 6 replies
- I was recently diagnosed as being a mosaic for VHL. I am interested in hearing from anyone else who is considered mosaic. I found out about VHL thanks to a nasty little renal cell carcinoma that rocked ...
Share fundraising ideas as well as suggestions for ways we can increase awareness of this often unrecognized and misdiagnosed syndrome, Von Hippel-Lindau (VHL).
- By Ariel · New reply October 27, 2008
- 8 replies
- Hi everyone, To start off, let me introduce myself; I am a junior in college, and six years ago, my mother and sister were diagnosed with VHL. Since my family found out about VHL, I have committed myself ...
